Sunday, 5 June 2011

Fighting A Losing Battle

I am so completely fed up today. For a long time now I had overcome my fatigue so that I was able to have relatively normal days, without the need for sleep constantly. However, since I had my last Rituximab (just over a week ago) the fatigue has returned, with a vengeance. The pain I can deal with, or at least pop a few pills for and hope for the best. But the awful thing about fatigue is that there is pretty much sod all you can do about it. There are no fuel type meds or tricks to give you that boost of energy you desperately need. It’s not a case of pull yourself together. And I stress that it is NOT tiredness. For those of you reading who may not have RA but know of someone who does, please don’t confuse fatigue with not having a late night or not enough energy to go to the gym. The only way I can describe it is like an all consuming, energy stealing cloud constantly fogging your brain.

You can’t think straight, sleep doesn’t help, your brain and body feel like mush warmed up and it stays with you despite ten cups of coffee or seven pints of red bull. Fatigue is, in fact, a disease itself. Many people suffer from it without having RA and it is, to put it bluntly, a living nightmare. The point is though, you don’t actually feel like you’re in the land of the living. You’re functioning, walking around, breathing and talking, but you don’t know quite how you’re doing it. Ever had those moments when you have a mind block when driving and can’t remember how you got there?

Getting fatigue under control is an impossible task. It’s not a case of having a nap or going to bed early. It just clings to you. You go to bed tired, you wake up tired. A never ending cycle of a complete feeling of uselessness. I got to a point a few months ago where I could go without sleeping during the day, I was still tired but I could cope. These past few weeks have been quite different. I literally get to a point where my body and brain give up and crave a rest. I guess it’s like ‘the wall’ when you run a marathon, except however hard you try, you can’t break through this one.

I am hoping that the wall will come down piece by piece in the next few weeks following my treatment as I am at the end of my tether. It makes you moody, agitated and irritable when you’re tired, but fatigue makes me an impossible person to be around (I’m guessing). I think it’s because I don’t know what to do with myself and I hate that I am trying to fight the urge to collapse but I’m not winning. I wish someone could come up with a cure for this ridiculous situation. Try as we might to fight RA, other things that come into the equation just take the biscuit.

3 comments:

Thanks so much for this amazing post-- it describes how I used to feel perfectly. My fatigue has gotten almost 100% better since I started Remicade treatments, but I am always scared I'll fall back.I am so glad to have found your blog and look forward to reading more from you!

Thank you for this, you're a star and please keep writing. I work in the field of Rheumatology and for years have fought the battle against the public for people to understand that arthritis is not an old person's problem, nor does it just include pain, but comes with a whole of other issues.I'm so grateful for this as will many other people be. You write with such clarity please keep going with this.

All About Me

At the age of 22 I was diagnosed with Rheumatoid Arthritis. I did not know much about the disease but it seemed my life would never be the same again. After months of despair, loosing a loved one and giving up my dream job I am finally coming to terms with my condition. I realised that I am not alone and with the help of incredibly supportive family and friends I can live a normal life and will not be beaten by this. I hope in reading my stories you too those who have been diagnosed will realise you are not alone and those who know someone will get an idea of how their friend/relative may be feeling and the challenges we face. Now 24, I am ready to share my story with you beautiful people (be ready for one hell of a rollercoaster ride!)